Fibromyalgia Resource

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I will never forget the month and year I came down with an illness of unknown origin. The month was January, the year was 1990. I lived in Los Angeles, California. My life was never the same after that.

What caused my sickness? Perhaps it was an environmental toxin.

I say this because at the time I was exposed to pesticides. My car had an exhaust problem so I naively drove with the windows open to blow the exhaust back out again. And one night while driving home from my night job, I drove through an aerial pesticide spraying for fruit with my car windows open. This spraying continued for a total of 12 times over the next five months because of a pandemic Mediterranean fruit fly (Medfly) infestation in fruit crops. (See the Time magazine article on the malathion spraying - "Medfly Madness”.)

Subsequent to this chemical assault, my immune system became dysregulated. I developed debilitating fatigue, flu-like symptoms, swollen lymph nodes, fever, aches and pains, bladder and stomach problems, difficulty concentrating, and major depression, to name a few.

The Search for Diagnosis & Understanding

This began the revolving door of doctor visits. I was lucky enough to find Dr. Hyla Cass, MD, a specialist in nutritional medicine and now an expert in CFS. She speculated I might have CFS and Fibromyalgia, and consequently referred me to Dr. Murray Susser, MD, who was eventually listed in the Alternative Doctors Hall of Fame and wrote the book, Solving the Puzzle of Chronic Fatigue Syndrome. He concurred I had CFS and Fibromyalgia and confirmed the diagnosis of CFS by a blood test called “Chronic Fatigue Syndrome Panel 2’” through Immunosciences Lab.

Dr. Michael Goldberg, MD, FAAP, a member of the Neuro Immune Dysfunction Syndromes (NIDS) Medical Advisory Board, also confirmed my diagnosis through a brain SPECT imaging scan. This is helpful documentation if you are seeking disability benefits.

Two years after I was diagnosed, I moved to a new apartment. I worked as a Drug and Alcohol Counselor for Chronic Mentally Ill Substance Abusers at Brotman Hospital in Culver City, California - my health rapidly deteriorating while I struggled to find a way to remain functional on the job. Six months later, I became bedridden. I continued different medical and holistic protocols to no avail.

I had no idea the inner layer of my apartment ceiling was filled with stachybotrys mold, also known as the ‘black mold’ - one of the most dangerous indoor toxic molds, as well as other saprophytic fungi (molds) which produced deathly mycotoxins.

According to Dr. Gary Ordog, a neurotoxicologist in Los Angeles, and Dr. Gunnar Heuser, MD, PhD, an Environmental Illness specialist, I subsequently developed Cushings Disease/Pituitary Tumor from the mold injury; which was removed December, 2003. (See my Cushings Disease Story at http://www.cushings-help.com/patg.htm.) Dr. David Bell, MD, author of the new book Cellular Hypoxia and Neuro-Immune Fatigue, states that toxins can initiate CFS: “Yes, mold and environmental toxins can definitely cause or initiate ME/CFS. Somehow toxins affect the cytokines in a way similar to the classic mononucleosis infection to set off the illness," he explained in a recent ImmuneSupport.com Q&A.

As a result of the Chronic Fatigue Syndrome intensified by the mold, I became sicker. I could not read, write, drive, or balance well enough to stand up to even bathe myself or make my food. I was debilitated from ‘neurally-mediated hypotension’. My blood pressure was erratic. It dropped when I stood up and I became light-headed and unstable on my feet. I was weak, in continual pain, so much so that I could not even move my arm to brush my hair. For two and a half years I needed outside assistance. I was so disturbed that my body and mind would not work together in harmony, and so miserable that I wanted to end my life.

CFIDS Association Offers Vital Connection

I was just a shell of what I used to be. I struggled to stay alive. I knew I needed to find a reason to live. I needed to connect to other people who understood what I was going through. I also knew 'being of service' to the community, and being productive, would make my life have value. So I contacted the CFIDS Association of America (http://CFIDS.org) and decided to become a hotline contact.

It gave me something to focus on and a reason to believe that life was worth living. Being a hotline contact was not an easy task. For a CFS patient, it was like climbing Mt. Everest. I had to monitor my time and activities. Talking 30 minutes on the phone was exhausting. If I didn't watch my energy expenditure closely enough, I could be bedridden for days on end.

I had to learn to live within 'the energy envelope’. I developed ways to settle my neurological system, and give my body an opportunity to heal. That is, ways to make my home environment user friendly, and to decrease my stress levels through self-nurturing behavior: meditating, listening to soothing music, taking a relaxing bath, receiving a massage, watching videos, eating pleasurable food, etc. I needed to be careful that I didn’t involve myself in any dramas.

My body was already in a war fighting these illnesses, and I wanted to learn how to turn this off; to give a new message to my body that it was safe. I started monitoring people, places, things in my life so that I was not depleted of energy. At first, it felt selfish, but then this new form of self-love and empowerment helped me feel emotionally stronger. By learning how to be ‘friends’ with my body, I started transforming into a new person.

I knew I wanted to create a safe environment where other people with Chronic Fatigue Syndrome and Fibromyalgia could feel accepted and share what was on their minds, receive support, resources, and referrals to health care providers. So I started the CEFCA Support Group at a local church. CEFCA stands for "Chronic Fatigue Syndrome, Environmental Illness, Fibromyalgia, Candida, and Allergies." At first, because of my condition, I was not able to sit in a chair, so I laid on the floor to facilitate the group. (For information about Environmental Illness/Multiple Chemical Sensitivities, see the Rocky Mountain Environmental Health Association website.)

St. Amand Protocol a Turning Point for the Fibromyalgia

At that time, I couldn’t even walk one block, I was so weak and in such pain that every day my body felt like it had just been in a car accident. Nine months after I began the group, September of 1993, I saw Dr. R. Paul St. Amand, MD, Director of the Fibromyalgia Treatment Center in Marina Del Rey, CA, for help. He confirmed my diagnosis of Fibromyalgia and prescribed a substance called guaifenesin (helps CFS in some patients). Within six months, my level of health shifted for the better. After two years, I became pain free and I could jog again.

During that time, out of necessity, I moved my support group to Kaiser Permanente's hospital conference room. Due to the tremendous need for support among CFS patients, more than 100 members were coming to each meeting to hear top specialists in the field lecture, including renowned doctors such as Dr. Jay Goldstein, MD, now retired, Dr. Jacob Teitlebaum, author of From Fatigued to Fantastic, and others I have mentioned above.

I ran this group from 1993 to 2003. My commitment to serve the community gained me 'Honorary Recognition Award' from the CFIDS Association.

Controlling the Remission-to-Relapse Seesaw

To this day, I rarely have pain from Fibromyalgia. As for Chronic Fatigue Syndrome, I have had a slow, gradual increase in vitality. I learned how to “live within the energy envelope” [using a simple energy level rating scale of 1 to 10], and how to pace myself [using tools such as an ‘envelope log’] - attaining a better level of functioning.

Initially, I went back and forth from remission to relapse, until I changed my lifestyle. There is no cure, and the cause is still uncertain, but I have found for myself that once I adapted my lifestyle, I achieved greater health.

Today, I have my life back. As a Psychotherapist, and 'survivor' of Chronic Fatigue Syndrome and Fibromyalgia, I can help others develop and adopt strategies like energy level management and self pacing to function better on a daily basis and have a better quality of life.

A Few Programs You Could Do At Home

One very hopeful and helpful free resource that you can access online is the book Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment by Dr. William Collinge, PhD, in collaboration with Dr. Daniel Peterson.

Another encouraging self care book that can be purchased inexpensively used or new and is particularly helpful for those of us who suffer from allergic reactions and sensitivities is The Rebellious Body: Reclaim Your Life from Environmental Illness or Chronic Fatigue Syndrome by Janice Strubbe Wittenberg, RN.

And following are some fee-based relaxation and educational programs that you can do at home:

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* Reproduced with permission of the author, Pat Gurnick, CLC. Pat is a Psychotherapist and Certified Lifestyle Counselor specializing in FM, ME/CFS, and Environmental Illness patient education. She practices in Boulder, Colorado, and can be reached at http://www.caringcounselor.com.

Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, ameliorate, treat, or cure any condition, illness, or disease. It is very important that you make no change in your personal healthcare plan or health support regiment without researching and discussing it with your professional healthcare team.